Caring for young people with moderate to severe psoriasis: an interpretive description of parental perspectives

Abstract

Introduction: Psoriasis often sets on during childhood or adolescence, when parents have great importance for the young people’s self-management, well-being, and quality of life. The aim of this study was to understand parents’ perspectives on young people’s daily life with psoriasis in order to improve adolescents’ self-management. Method: Adopting interpretive, description methodology (ID), focus group discussion, and interviews were conducted with eight parents of adolescents with psoriasis. The analysis was inductive with an iterative comparative approach. Main themes conveying participants’ perceptions were identified for constructing a coherent narrative of parents’ perspectives on their young people’s transition with psoriasis through adolescence. Results: Parents initially perceived psoriasis mainly a physical and treatment-related burden and not until late realized its socio-emotional impact. They eventually found themselves balancing between declining treatment due to fear of side effects and acknowledging the impact on their young people’s quality of life and their desire for effective treatment. Conclusions: Caring for young people with psoriasis is a stressful process involving experimental learning to understand and manage the complexity of psoriasis and its impact on adolescents’ emotional and social life. Future research should consider integration of shared decision-making and self-management support interventions in routine daily care as focus points.

Keywords

• psoriasis
• self-management
• young people
• parents
• qualitative